Larotrectinib (Vitrakvi)- any experiences of this for NTRK fusion?

[hkz]

Ds (15) is being put on Vitrakvi - sounds pretty manageable compared to other options- has anyone got any experiences of how their DC coped with this? Hoping it will shrink tumour so he can access radiotherapy.

Hi @hkz

My DS was not on this, but from the limited amount I've read, if it works, it works quickly.

https://www.ema.europa.eu/en/medicines/human/EPAR/vitrakvi

I hope someone with specific knowledge comes along soon and that this treatment works for your DS.

Thanks @C152 thats a really helpful link.

The consultant (who has treated DS for most of his life and who I have good faith in) talked through risks but was a bit blasé that it would all be fine. And from reading the trial results and NICE guidelines etc, there is every reason to be hopeful about mild side effects.

No one seems to know about future fertility as the drug is new. I will ask about the options for this. just interested to hear anyone else’s experience as it is all so rare and very little info available anywhere

I think I wouldn't be blase about the common side effects. They sound like the side effects you get from most (all?) cancer treatments, and they're not a walk in the park. If you haven't already, I would prepare your DS and tell him about the things he might experience.

I caveat that by saying, of course, everyone reacts differently and your son might be lucky and experience no or very few side effects. (I hope that's the case.)

Thanks @C152 I hope that’s the case but it’s good to mentally prepare for it not being the case too. He has had some pretty brutal treatment in the past so I think this will be easier, but he doesn’t remember the past experiences as he was a lot younger and on a lot of morphine so forgot the worst of it, thank fuck.

Just updating but also looking for others experiences.

so the Larotrectinib is working well- he has done 10 weeks of it now and the tumour that was filling half of his chest cavity has shrunk back massively and he is tolerating the medication and has no major side effects. So this is good. But it hasn’t shrunk enough yet for the Proton Beam/ Radiotherapy as it is still too near to major organs. He had a CT yesterday and another one in 8 weeks.

The CT yesterday and the one he had 3 weeks ago showed nodules on his lung. Has anyone experienced this? I trust his oncologist and he has treated DS since he was 2, but he just seemed to casual when he mentioned the nodules. He said at this stage all they can do is monitor when they do the next CT, they may be nothing, they haven’t grown between the last 2 scans (3 weeks apart) and they could be nothing, scar tissue, etc not necessarily a spread of the tumour. So 8 more weeks of waiting.

DS is fine and not symptomatic of any lung problems. Although now I can’t tell as I am not really being subjective and probably over analyzing his breathing, every time he coughs etc.

I am normally the queen of putting things in a box and trying not to worry until the next scan. This has floored me a bit. DS’s dad and I are divorced and he is not easy to talk to about these things. So I don’t really have anyone who gets it in RL. I want some reassurance that no one can give. I am so grateful his tumour has shrunk, that the drugs work and he is doing ok. I know in many ways he is lucky. I am just scared, and worried and sad. I think you wouldn’t know this from the outside and I try to be upbeat and positive- but I feel like I have hit a wall.

Very glad to hear the drugs are working and your DS is managing the side effects. It's a rough ride though, @hkz, and I have found it to be a constant wave of managing ok, troughs and crises.

It's ok to be scared and worried; it's normal, in fact. But it is hard to talk to most people about this sort of stuff when they have no experience. Do you have a close friend you can rely on a bit more, to be a sounding board? I had one very kind and generous friend who I rarely saw but texted almost daily for a year. They never judged me, whatever I said or felt, and they remembered every upcoming scan or operation or treatment and asked how it went and reminded me they were there for me. It didn't make things better, but it did provide a bit of a pressure relief valve.

Thanks for replying @C152 . You are right what you say about the waves, and the relentlessness of it all. I am glad people I know have no experience of this, I wouldn’t wish it on anyone, but it is very isolating. I feel detached from my real life friends, and it makes me feel really angry sometimes. A horrible sad and irrational anger and it’s no one’s fault.

I do have a good friend I could talk to- I think I just feel slightly unhinged by it all at the moment and try so hard to keep it together for my son who is having treatment, and for his two sisters, and to keep my job going and to manage all the interactions with EXH. This has been in our lives since DS was tiny, but I find it so much harder now he is older and more aware of it all. And it has all got worse. I would give anything to change this.

I just don’t know what to say to people. They can’t do anything. But at the same time it feels like I am trying to hold the sky up with my hands and it’s falling down around me.
The tumour just feels like a shadow that is always there.

I am just so scared by these new nodules showing up in the scan, it’s just another shit thing. And now it’s 8 week wait for another scan, although bloods and clinic again in 3 weeks.

DS does not want to engage with any of the Young Lives v Cancer support , and I am not really sure what is going on in his head. I totally respect his choice here. But I worry about that too

anyway. I feel better for venting.

Young family member also on immuni infusion. He has responded well to it but the radiation left a number of major lifetime problems. I cannot believe how much they have damaged his life in order to save it. Recently after two years of infusions he has been getting physically sick. We aren’t sure if they are related yet.

Did you get the results @hkz ? Lung nodules can be present without any real symptoms. Not what you want to hear but I think we can be honest on this board…..

Hi @ScaredOncologyMum , CT scan early next week and next review straight after, so will know the next stage of treatment plan then (although who knows- these appointments never align with expectations).

DS’s bloods have all been clear and no symptoms I have noticed. So hoping the scan shows no change/ nodules gone/ something positive. Just locking it all in a box until next week and trying (unsuccessfully) not to worry. Thanks for asking

so DS’s tumour has required resistance to Larotrectinib and the next option is a trial on a 2nd generation inhibitor. Our local hospital can’t offer the trial so will have to travel to Glasgow for this. DS is 17 and mid A levels and was meant to be going away next week. I just feel totally gutted for him, that this is just never ending and relentless and as he goes into adult hood this will be ongoing for him. It’s treatable ish, not curable.

he is generally well, he is accessing amazing medical support, I am so grateful for this and his quality of life. I just feel exhausted and so angry that he has to deal with this. it feels so much harder now he is older and I can’t protect him from it, all the decisions are his really and it’s very hard stepping back whilst being there. I just hate that he has to start a new treatment, this one is more potent than the last one, and each new treatment means less future options as we are trying all the current ones.

not been to the hospital at Glasgow before- anyone familiar with it?

Hi @hkz . Just wanted to check in. How is your DS now? Is he on the new trial? I am so sorry this is his life now.

Thanks for checking in @C152 - he starts the trial next week so fingers crossed 🤞

Hope it goes as well as these things can. X